"My story about RA and Lyme disease "

About: Greenwich Teaching PCT Queen Elizabeth Hospital (London)

(as the patient),

I grew up as a healthy, strong individual who has almost never been ill until 5 years ago.

Then I was diagnosed with glandular fever which really took a long time to recover. In fact, I have been unwell for a while now with great tendency to catch any infections and was diagnosed with several illnesses etc. I had chronic tonsillitis, eye infection with extreme sensitivity of light, and sinus infections. I had issues with tremors and numbing in my hands and knees, chronic head ace, loss of hearing, dizziness, memory and disorientation issues.

Last year I had 3 operations and was cleared all cysts and polyps from my inner ear, sinus and forehead. (These operations all had to be done outside the UK privately because I couldn’t get one appointment which was not postponed at least 3-4-5 times. For me it was not possible to wait as my face was so infected that I could not open my eye, swallow or walk properly because of the joint pain. I was continuously on high dosage of Co-codamol.)

After the operations my other symptoms just remained and I felt very weak and tired all the time. I was referred to rheumatology and was diagnosed with seropositive rheumatoid arthritis. I started to take Methotrexate but instantly I had shingles or shingles-like rash on me with a temperature and I was really week and unwell too.

After the antibiotics and six week pause from the Methotrexate I started again on the 21st Dec. By the 26th Dec we had to go to emergency because I was shaking had disturbed vision and I almost couldn’t talk because I was so unwell. Got the diagnosis of shingles again and took the antibiotics again. Since I have shingles on and off all the time and have many scars on me.

I have stop taking my medications completely because no one at rheumatology could advise me what to do and I feelt they started to ignore me completely.

I have started to get better since, but caught some infections during and it was very hard to recover from the usual throat, eye, and sinus infections. My GP has always been very helpful and try to do as much as they could. During this time, I was treated at rheumatology and blood tests were taken monthly. The results were very inconsistent eg. one shows high infections but the previous one doesn’t.

As a result of the above (and despite all the previous experiences); I was advised to take immune suppressing meds again but I was terrified to do that. So I decided to go privately for second opinion.

There it was suggested, by another immunologist where I went privately, that I have some underlying infections and these will surface by making me very ill when I take the immune suppressing pills.

(It was suggested that I may have ‘Chronic Lyme Borreliosis' or something similar. I grew up by the bank of the Danube and so we had lots of tick bites.. we didn’t pay much attention to them though at that time.)

My life was a misery and I had no hope to be able to work again despite I have 3 degrees and had a great job which I loved before! I was terrified if I didn’t go back to work I would loose my partner, my job and everything I had achieved and loved before. I was devastated…

I got tested privately for borrelia and the result was positive chronic lyme borreliosis. The consultant at rheumatology immediately discharged me because he ‘did not believe’ in such illness. Despite that he held the blood result in his hand. The private consultant started me on the usual high dosage of antibiotics and this course has had great result. I have now gone back to work full time although on lighter duties.

I went back to my GP because some of the neurological symptoms are still present (tremors, involuntary movements, loss of direction, dizziness etc). I am afraid they could not do anything because these and may be the result of Lyme which is not recognised nor paid by the NHS. I was furious. How could this possible, the NHS picks and chooses what illness to provide treatment? And if so why am I paying the NI contribution?

I am extremely disappointed in the NHS because of the lack of support and the ignorance I have experienced through the years. Although my GP is trying to be helpful keep me positive, this is the most they can do. They cannot offer me any medical support.

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